Kidney Information Network
Social media has revolutionised the way people communicate and engage with each other using multiple information sources (such as blogs, posts sharing personal stories, opinions, and reviews), which become powerful tools when combined with the social web. The award winning Kidney Information Network is a joint venture between University of Salford, NHS trusts and kidney patients in response to patient demand to develop a mechanism to enable them to talk to other patients and share experiences. It builds on a concept tested and evaluated in Greater Manchester (GMKIN) in response to political and social drivers to patient-centered and preventative care. In 2019 we expanded to Cheshire and Merseyside area (CaMKIN). A longitudinal research study of the effectiveness of GMKIN identified that patients contributed to information generation, which satisfied information needs (Vasilica, 2015, Vasilica & Ormandy, 2017, Vasilica, Brettle & Ormandy, 2020). Fundamental to the success of GMKIN was the local aspect, development of meaningful relationships and trust among users through light discussions, sociability and supporting prospective group. The research generated national guidance on public involvement using social media and has influenced other initiatives linking patients/users and professionals via social media to foster peer support, communication, information sharing and self-management. The network has won the Innovation Champion award for best use of social media at the NHS Health Education England Adult Learners’ Week (2016) and received the prestigious Big Chip digital award (2018).
During the COVID-19 pandemic, the network enabled a clinical team to effectively communicate changes to patients.
“CaMKIN has been an invaluable communication platform to disseminate information to transplant patients and a platform in which patients can ask questions that can be answered directly. This has allowed the clinical team to provide support to patients.”
Funders
Hope Kidney Patients Association
MRI Kidney Patients Association